Social Media Help Diabetes Patients (And Drugmakers) Connect

Cameron Harris, who has had Type 1 diabetes since he was 8 years old, explains the ins and outs of using glucagon for blood sugar lows. Harris hosts a video podcast series called "In Range" on YouTube.

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Originally published on December 3, 2012 7:20 am

When Kerri Sparling was 7 years old, she was diagnosed with Type 1 diabetes. Her family didn't know anyone with the disease, so they sent her to diabetes camp — "where every single camper had Type 1 diabetes," she says.

"That was my first sense of not only other people who had diabetes, but a true community," says Sparling.

Things are very different today. About 26 million Americans have diabetes — mostly Type 2 — and the Centers for Disease Control and Prevention predicts that as many as one-third of adults could have diabetes by 2050.

People living with diabetes have created a vibrant online community. Big drug companies are certainly taking notice — and some advocacy groups feel that the Food and Drug Administration should as well.

Sparling chronicles her own journey with the disease on a blog she started in 2005. Other people in the DOC — that's the diabetes online community — share on YouTube. There are videos with advice on everything from removing an insulin pump to telling your date you have diabetes. There are also reviews of products to treat diabetes.

A few years ago, drug companies started paying attention to these video testimonials and to bloggers talking about their products. The companies even created their own social media sites.

"Our primary platform is our blog Discuss Diabetes," explains Dennis Urbaniak, the head of diabetes at drug giant Sanofi US. They also have a Twitter account, a Facebook page, and a diabetes dictionary, and they're looking into Pinterest and Instagram. "Getting involved in social media is a critical component of serving the diabetes community," says Urbaniak.

And it's not just serving the community; it's serving companies' bottom lines. Treating diabetes is extremely profitable. Every year Americans spend more than $100 billion on diabetes care. So, in addition to tweeting about new products, pharmaceuticals are sponsoring bloggers like Sparling.

"If we're talking about what we want from our devices, it is in their best interest to be hearing that and making the changes we're requesting so they can improve their sales," Sparling says.

Sparling has a disclosure on her website stating she receives free products from two drug companies, and that one pays her to speak at events and contribute at her site. But critics say that's not enough.

"People do not read disclosures. The FDA and [Federal Trade Commission] need to create a whole new system for disclosing when a blogger or group gets paid by pharmaceutical companies," says Jeff Chester of the Center for Digital Democracy. He says pharmaceutical companies are using social media to promote their gadgets and drugs in a deceptive way.

"Because you might find on a pharmaceutical website a series of videos that have been tested, by the way, to make sure that they really deliver the message, and these messages, testimonials, appear to be people like you. Although sometimes they are, in fact, paid or allied with a drug company," says Chester.

Chester says pharmaceutical companies need to be very clear about their intentions and presence online. An FDA spokesperson says the agency is currently working on guidelines for drug companies and social media, but declined to make someone available for an interview.

Urbaniak, of Sanofi, hopes new guidelines won't interfere with his company's online dialogue. He says tweets and Facebook comments help Sanofi connect with people in the diabetes community — and come up with ideas for ads.

"In the past, the ads would always show the perfect blood sugar number, and the community says, 'You know, that's a bit insulting because it implies it is always easy to get this. Show a number that's high or show a number that's low. Make it real.' And so this is the kind of feedback that's been really helpful," he explains.

But what are patients getting out of social media? It's unclear whether connecting online is helpful for adults treating diabetes. "There's no proof in diabetes that social networking is helpful," says Jason Bronner, a doctor at the University of California San Diego Medical Center. He's leading a study that will help determine whether social networking can actually help patients manage diabetes.

"We know a lot of patients are on the Internet. Patients are more likely to get information from the Internet than they are from the doctor," says Bronner.

That isn't necessarily a bad thing. Bronner refers patients to trusted websites and asks them what they're reading online.

"As a doctor, basically what you want is to make sure the patient is relying on an accurate source of information, and if you don't know that they're on these websites, you're not going to know they have a chance of getting misinformation," says Bronner.

Blogger Kerri Sparling isn't worried. She says the diabetes online community can tell when something's fishy. "If we see someone swooping in with their chocolate shake that cures Type 1 diabetes, there's going to be a voice raised saying, 'Wait, wait, wait, that's not true! Or, 'Don't come in and spam our community.' We protect ourselves in that way," she says.

She says most people in the diabetes community want big pharma to pay attention to them. Now that they are, the challenge is making sure the relationship benefits people with diabetes, and not just the drug companies.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

RENEE MONTAGNE, HOST:

This is MORNING EDITION from NPR News. I'm Renee Montagne.

DAVID GREENE, HOST:

And I'm David Greene. Good morning.

Today in Your Health, how texting can help smokers quit. We'll have that in a moment. First, how social media might play a role in helping people with chronic diseases. A decade ago it wasn't that easy for people suffering with disease to connect with one another and share stories of coping. Now there are dozens of online networks and few are as established as the online community of people living with diabetes. As NPR's Lauren Silverman reports, this has the big drug companies taking notice.

LAUREN SILVERMAN, BYLINE: When Kerri Sparling was seven years old she was diagnosed with Type 1 diabetes. Her family didn't know anyone with the disease, so they sent her to diabetes camp.

KERRI SPARLING: And that was where every single camper had Type 1 diabetes, so that was my first sense of not only other people who had diabetes, but a true community.

SILVERMAN: Things are very different today. About 26 million Americans have diabetes, mostly Type 2. And the CDC predicts as many as one third of adults could have the disease by 2050. So there's no need to go to camp to connect with people living with Type 1 or Type 2 diabetes. All you have to do is go online.

SPARLING: Now when you put diabetes into Google you find real people living real lives with Type 1 diabetes. That's an incredible journey.

SILVERMAN: Sparling chronicles her own journey on a blog she started in 2005. Other people in the DOC - that's the diabetes online community - share on YouTube.

(SOUNDBITE OF VIDEOS)

UNIDENTIFIED WOMAN #1: I'm going to tell you what diabetes type 1 is all about.

UNIDENTIFIED MAN #1: This is about eight months worth of needles.

UNIDENTIFIED WOMAN #2: I take injections a billion times a day.

SILVERMAN: There are videos with advice on everything from removing your insulin pump to telling your date you have diabetes. There are also reviews of products to treat diabetes.

(SOUNDBITE OF VIDEOS)

UNIDENTIFIED MAN #2: We're going to be focusing on the gear you use to keep your diabetes in check.

UNIDENTIFIED WOMAN #3: The Minimed versus the OmniPod insulin pumps.

SILVERMAN: A few years ago, drug companies started paying attention to these video testimonials and to bloggers talking about their products. The companies even created their own social media sites.

DENNIS URBANIAK: Our primary platform is our blog Discuss Diabetes.

SILVERMAN: That's Dennis Urbaniak. He's the head of diabetes at drug giant Sanofi U.S.

URBANIAK: We also have a Twitter account.

SILVERMAN: A Facebook page, a diabetes dictionary, and they're looking into Pinterest and Instagram.

URBANIAK: Getting involved in social media is a critical component of serving the diabetes community.

SILVERMAN: And it's not just serving the community. It's serving companies' bottom lines. Treating diabetes is extremely profitable. Every year Americans spend over $100 billion on diabetes care. So in addition to tweeting about new products, pharmaceuticals are sponsoring bloggers like Kerri Sparling.

SPARLING: If we're talking about what we want from our devices, it's in their best interest to be hearing that and making the changes that we're requesting so that they can improve their sales.

SILVERMAN: Sparling has a disclosure on her website stating she receives free products from two drug companies, and one pays her to speak at events and contribute to its website. But critics say that's not enough.

JEFF CHESTER: People do not read the disclosures. The FDA and the FTC need to create a whole new system for disclosing when a blogger or group gets paid by pharmaceutical companies.

SILVERMAN: Jeff Chester runs the Center for Digital Democracy. He says pharmaceutical companies are using social media to promote their gadgets and drugs in a deceptive way.

CHESTER: Because you might find on a pharmaceutical website a series of videos that have been tested, by the way, to make sure that they really deliver the message, and these messages appear to be maybe people like you, even though sometimes in fact they are paid or allied with the drug company.

SILVERMAN: An FDA spokesperson says the agency is currently working on guidelines for drug companies and social media but declined to make someone available for an interview. Dennis Urbaniak of Sanofi hopes new guidelines won't interfere with his company's online dialogue. He says tweets and Facebook comments help his company connect with people in the diabetes community and come up with ideas for ads.

URBANIAK: In the past, a lot of the ads would always show the perfect blood sugar number. And the community says, you know, that's a little bit insulting, because it implies that it's just simple to always get this. Show a number that's high or a number that's low. Make it real. And so this is the kind of feedback that's been really helpful.

SILVERMAN: But the question is, what are patients getting out of social media?

JASON BRONNER: There's no proof in diabetes that social networking is helpful.

SILVERMAN: Jason Bronner is a doctor at the University of California San Diego Medical Center. He's leading a study that will help determine whether social networking can actually help patients manage diabetes.

BRONNER: We know that a lot of patients are on the Internet. And patients are probably more likely to get information from the Internet than they are from the doctor.

SILVERMAN: Which isn't necessarily a bad thing. Bronner refers patients to trusted websites and asks them what they're reading online.

BRONNER: As a doctor, basically, what you want to make sure the patient is relying on an accurate source of information. And if you don't know they're on these websites, you're not going to know they have a chance of getting misinformation.

KERRI SPARLING: If we see someone swooping in with their chocolate shake that cures Type 1 diabetes, there's going to be a voice raised saying wait, wait, wait. That's not true, or don't come in and spam our community. Like, we protect ourselves in that way.

SILVERMAN: She says most people in the diabetes community want big pharma to pay attention to them. Now that they are, the challenge is making sure the relationship benefits people with diabetes, and not just the drug companies.